Monday, December 31, 2007

It's not been a bad year, nothing terrible has happened and even my health hasn't been disastrous. But very little has gone according to plan; it has been a year of great frustrations and a lot of those have been around the shortfall between what I wanted to do and what my health would let me do. Right now, I must admit, I feel decidedly negative about this. The nights may be drawing out but we're about to enter the darkest days for the immune system and mine is already decidedly ropey. Not that I am likely to catch anything that would carry me off or anything like that, but I really don't want to feel any worse than I do just now.

I think I will put down 2007 as a learning experience. I'm sure I have learnt a lot, but I haven't entirely ironed out my perspective on things and I'm likely to be rather dull and vague if I go there right now.

Christmas was mostly very good, thank you. My cake was a great success, so far as I can tell. Rather, uh, moist, but that was to be expected. Some of it has travelled as far as Snowdonia, would you believe? I saw Alexander on Boxing Day and it seemed that he was having a lovely time, even if he did get enough toys to furnish a large kindergarten. His favourite present had been a baby-baby-grand, so to speak, which he played all Christmas Day and then returned to, stark naked, after his evening bath.

I gave him a stool which I had decorated and painted and a doll I made. He responded well to the stool in so far as he immediately understood that it was something to sit on. The doll is called Petal the Pirate (to be friends with Kettle - Petal doesn't look much like a pirate, I know but she is one because I said so). I wrapped Petal up such that she could still see out of the wrapping paper and as soon as Alexander spotted her eyes, he tore off the paper, pulled her out and gave her a big hug. He then ran off with her and came back empty handed. I later found her sat in a pair of slippers; I'm not quite sure what that means.

So that was Christmas and now we're about to enter 2008. Despite my significant fears about January and February, I do feel positive about the new year. I've spent the last several months waiting for my health to improve after a dip. Now is the time to stop waiting around and investigate whether there are different ways of going about the things I want to do. I'm sure I haven't exhausted all the possibilities just yet.

Sunday, December 23, 2007

Almost. Look; the twenty-third of December. How did that come round so quick? Tomorrow I will be in my late-twenties as opposed to my mid-twenties, which is quite exciting. Twenty-seven has always struck me as a very sexy age to be; I'm feeling due for a prime number. Also, for most of this year I have thought I was twenty-eight for some reason, so I've unexpectedly gained a year - or two, I guess.

We made it to Cambridge on Thursday and had a very nice day indeed. The Sedgewick Museum was really very good. Probably the most boring place in the world if you have no interest in rocks and fossils and I think you'd probably have to apply a fair amount of imagination to enthuse a child on the matter.

Then we went to a pub called the Eagle for lunch. We went to this pub because it was one my folks had been in before, but in fact it turned out to be the pub in which Watson and Crick had got pissed every night, and whose room-swimming had revealed the anti-clockwise orientation of double helix (that's not at all what it said on the plaque on the wall, but I filled in the narrative gaps). We then went to the Art Gallery, which was very nice and we finished up at the Starbucks in Borders, where Jess's husband maybe saw Stephen Hawking (I recounted this almost-anecdote at the time and everyone was very impressed). And I had Gingerbread Coffee, which is weird but very nice, and my folks bought me a book I'd wanted for ages.

So that was all very good. And whilst of course I've been knackered since, I've not entered any kind of major collapse, as I feared I might - it was easily the busiest day I've had since we moved house in February. I'm now looking forward to Christmas, which should be fairly quiet and manageable.

I hope you all have a lovely Christmas and thanks for all very much the support you have given me this year.

Tuesday, December 18, 2007

So I finish all my card-writing and get them all in the post in reasonable time. Then I take one last look at the list and it occurs to me that one of my oldest and closest friends - the friend who I have more contact with than any other - is completely absent from the list. Okay. First Class Stamp for that one, I reckon...

Otherwise, I'm almost ready for Christmas. There are a few bits and pieces I'm yet to do, but it is mostly non-panicking fun stuff. Just now I am saving my energy for Thursday when I am hopefully going to have a Grand Adventure.

As a birthday present from my folks, we're going to have an adventure in Cambridge. We are going to the Sedgwick Museum of Earth Sciences. They have an iguanadon skeleton and [...] has never ever seen a dinosaur skeleton - imagine! They also have stuff like Darwin's geological writings and artifacts (although for all I know, Darwin was a crap geologist and this is just a collection of rocks labelled "grey rock", "dark grey rock", "even darker grey rock" etc.).

I like dinosaurs. They found a new species recently, which according to the illustration on the BBC News website (a) strode about with somewhat of a mince and (b) was the natural prey of the Routemaster Bus. I knew those old buses were extinct now, but I didn't realise they'd been about so long.

(Actually, when I just found that link to put in, the picture had changed to show a single-decker bus, but I promise, it had been an old-fashioned double-decker red London bus last week when the story was reported.)

The reason I'm telling you all about proposed adventure is that I'm really quite anxious I won't be well enough and it won't happen, but if I write here that it will happen, then perhaps by magic it will.

No, me neither, but it's worth a shot. I do seem to be picking up, slowly but surely.

In other news, [...] stripped the wallpaper off in the hall to find, written in big capital letters on the plaster, No sex today later. No idea what that means, especially the "later" bit, but better than finding Die die die or Accursed are all those who dwell within, I guess.

Friday, December 14, 2007

I'm sorry I have been so slow to reply to comments; they are always very much appreciated. Still pretty crappy, though it's coming and going. Rather preoccupied by illness nevertheless, as I so desperately want to be better for Christmas. There are several letters and e-mails I really want to write before then and that's not happening yet (one of the letters needs to get to France before Christmas, so that's getting very tight). And there are certain daily indignities which are really getting me down just now, although they are way too dull or too gruesome to talk about. In fact, even the gruesome ones are quite dull.

The other reason I am preoccupied by all things health is that I finally finished my godforsaken Disability Living Allowance forms. Bastard bastard bastard forms. Cusp recently wrote about how her saga with the Insurance Company triggered a sense of being bullied. Filling in DLA forms is not nearly as bad as that, but all this stuff - this general area of having to prove oneself to have significant impairment - presents a battering for the self-esteem.

I always advise others to accept that it isn't at all personal. These systems - insurance, benefits, financial assistance of any kind - all have to work on the basis that they won't give you the money unless their hand is forced. Every claim that can be challenged will be challenged. Even when your case is rock-solid, they have nothing to lose by turning you down in the hope that you don't have the energy to jump through the hoops of an appeals process.

I have some experience of presenting a case which cannot be refused - I don't consider myself safe, but I have enough experience to think that whatever happens, I'll get what I'm entitled to eventually. I have filled in this form on someone else's behalf, and whilst it was a bit tricky (my friend had mental health problems, which don't "fit" terribly well with the design of the form), it wasn't hard work. It was an ordeal for my friend, of course.

Doing my own, however, is deeply demoralising. For those who are fortunate enough to be completely ignorant of such things, the DLA forms require you to

(a) quantify the extent of your impairment in a ridiculously precise manner. If you have difficulty walking, for example, they want to know how far you can walk to the meter, how long it takes you (in this form, they asked this question three times rephrased), the precise angle and rate of oscillation if you have a wobble etc..

(b) explain in layperson's terms exactly why you have this difficulty. So, if you have a condition characterised by pain and fatigue, you basically have to go on about how much it hurts and how exhausted you are on every single page. At the same time, of course, you must not sound like you might be over-egging the pudding.

This is a deeply depressing process. You don't merely have to think quite hard about what your limitations are and how to phrase them, but you worry about understating or exaggerating them - which is easily done. When you can only walk a short way, that distance might easily be doubled or halved on a particularly good or bad day. But you don't really know because whilst you haven't been paying that close attention. And this applies to every practical aspect of your life.

The bitter cherry on this particular cake was right at the end when [...] wrote his little piece. They have a tiny box in which a person who knows you has to detail your "disabilities" and how they effect you. I am tempted to share with you what he wrote for your amusement, but it is also somewhat embarrassing on account of its... tragedy. Suffice to say I did suggest we replace his words with a photograph of a wide-eyed kitten with a bandaged paw. In fact, I thought about going through the whole thing and pasting in pictures of wounded animals, but I couldn't find enough animals to wound.

Saturday, December 08, 2007

This is a kind of Bare Bones of Equality post. During my recent brain-plummet I read this post at Screw Bronze! Elizabeth writes,

"Which gets me to my question, what use am I as a human being? Why should anyone come to help me eat, or help me to the bathroom, or help me to bed when I can’t move? Why should I be taken care of? What purpose do I serve in our national and social framework? The plain fact is that I am not well loved by many people: my family whether immediate or extended isn’t interested in assuming the burden. The reality is that care isn’t coming from family. So it falls to society. And I, as a rational member of society (albeit only barely rational in this level of pain) don’t see the gain."

Finding myself to be rather less active and productive than Elizabeth, I decided to climb into the compost bin so that at least my decomposing corpse could nourish the plants. Only [...] pointed out that it would take ages, it would smell really bad and in the meantime, he'd have nowhere to put the old teabags.

In any case, I do know some of the answers. Of course, what we know doesn't always hold sway over what we feel, especially when we're in great pain and/ or feeling particularly frustrated by our limitations, and I've felt, said and written this sort of thing often enough. I want to emphasise that I'm not criticising Elizabeth for writing such things. However:

The founding assertion of egalitarianism is that every human being is of equal value. From this, it follows that everyone should be given equal opportunities in life and equal respect.

Like all fundamental moral tenants this (a) demands lots of qualification and (b) goes against a small but significant part of our human nature. Naturally, I consider my friends and family much more important than anyone else in the entire world. Most of us are, to some extent, attracted to convenient groupings and hierarchies. But as with our murderous inclinations, we must not bring these feelings into the way we behave in society. We don't have to send everyone a Christmas card, but we do have to give everyone the same chances in life - and indeed for life.

In fact, the only issue about my life which can be called into question is its viability, rather than its value. There are often rumblings along the lines that disabled people can only possibly be seen as equal when a society is affluent enough to indulge us. This isn't true; our value does not change. However, if two of us catch deadly Umbungo Disease and there's only one dose of cure, then the chances are that the best possible outcome (a life saved) can be achieved by giving the dose to the other person. If I am on a sinking ship with a shortfall of life-jackets, well someone else probably has a better chance of staying alive and swimming to safety than me. Morbid, but extremely unlikely events.

Those who disagree are often drawn to even less likely Desert Island scenarios. If I am one of a party stranded on a desert island with very limited resources, then I am going to be much less useful than everyone else. I will make no contribution. Worse, I will actually take resources from other people. The best possible outcome is only achieved if I am strangled and roasted for dinner (although cook me very thoroughly or you might catch something).

In fact, perhaps I could be very useful; the first thing I could do is seize the conch and solve tricky moral dilemmas like this one, reassuring my companions that I should be kept alive - advice I'm sure they'd all appreciate. But why?

This is not about sanctity of life. Capital Punishment is an absolutely ludicrous idea in a society that can well afford to imprison people for life, but on our desert island it would be impossible to secure a person who poses a threat to the rest of us, so they'd need taking out. Their existence effectively becomes inviable.

Nor is this isn't about arguing that whilst I cannot contribute physically, I may be able help put imminent starvation and death into perspective with daily poetry-readings. It doesn't matter if I can play no useful role at all. I remain of value because I am a human being. This doesn't mean that people should abandon raft-building and start constructing ramps so I can get about all over the island; even the most modern disability law, adjustment made to enable people with impairments to access the world must be qualified as reasonable given the circumstances and the resources available.

The alternative isn't a situation where we settle into some sort of "natural" hierarchy with those who are most useful at the top and those who are apparently useless being left by the wayside*. The alternative is a perpetual and bitter argument in which everyone attempts to argue for their own indispensability. Not only is the usefulness of an individual quite impossible to measure, but it is constantly changing and inextricably connected to the activities of other people.

Let's float our rudimentary raft away from that accursed island and back to the real world. In terms of contribution weighed against consumption, living in the West just now poses a small problem for everyone, and ecologically, the very richest people use the most resources. But we were talking about individuals within single societies as opposed to geopolitics, weren't we?

Let's take someone useful - a doctor, perhaps? A medical doctor is always useful, right? I wouldn't argue with that. However, even their usefulness is subject to variation. In the absence of technology, medicines and other resources, a doctor's powers to heal are very limited indeed. Then again, in a society where everyone enjoys good hygiene, nutrition, safe living and working conditions, a doctor's usefulness is somewhat less than it would be, say, in a war zone.

Also, in order to be as useful as possible, a doctor also depends on several other roles to be fulfilled. People who organise paperwork, who make appointments and so on. Nurses who perform less expert but no less essential roles (that's the theory). People who keep things clean. Then everyone who helps to provide equipment, medicine and so on and probably half a dozen other roles I haven't thought of. All very important, very useful.

So the reason doctors are so useful is that they can save lives and improve quality of life. Teachers don't directly save lives, they do the quality of life thing, but that's a little more complicated. What about lawyers? Or accountants? People who work in telesales? The prime-minister? The Beckhams?

And how do these roles - which people are paid to do - compare with those roles which people are not paid to do. How does a fire-fighter rate against an excellent parent? How many of us feel we owe our happiness, sanity or even our lives to our friends? Might it actually be the case that lots and lots of people are far more use outside of the thing they get paid for?

Nobody is without a role. Even the most severely impaired person plays some role in the lives of others; should we suppose that this is negative? That anyone truly takes more than they give? Economically, they may - I do, and because of the stage of life that I happened to get sick, I always have**. However, I do help support the existence of others; I am a patient, a client, a customer. People like me provide a convenient scapegoat for an incompetent and corrupt government. And then there are all the other things I do for people which matter terribly to me but are kind of irrelevant, being conditional on how sick I happen to be.

Now, all this doesn't mean we don't have responsibilities towards one another, and that we shouldn't all aspire to live a virtuous life and all that. Only our value cannot be diminished by involuntary limitations on what we are able to do.

That having said, it's bloody frustrating and changing levels of dependence and loss of self-sufficiency are a rock solid git to come to terms with. So everyone is allowed to feel like a waste of space from time to time.

The other day, Fluttertongue referred back to a post she wrote about being "done to" which offers a spiritual perspective to the frustrations of inactivity and is well worth a read.

* When something is by the wayside, well surely the wayside is at the side of the way already? I lose sleep thinking about that sort of thing.

** None of us should be ashamed of this because, as I've said before, it is a universal insurance policy from which everybody has an equal right to claim should they find themselves in need. Medical, practical and financial assistance is provided for us as it would be provided for the most economically productive person should they have a nasty accident tomorrow (which might well happen). It is the (bad) luck of the draw who finds themselves in this position, however much they have paid into the system through tax. Meanwhile whilst voluntary and family carers get a very raw deal, most are making a choice; care provided by the state is unequivocally consensual and indeed, renumerating. People who do this work deserve respect and appreciation, but this is not charity.

Wednesday, December 05, 2007

Trouble is, of course, that my confidence has gone. I've had these few weeks of struggling to think, let alone to get my thoughts across to anyone else, and I've lost the confidence to write anything. I keep clicking on Comments boxes, before chickening out of whatever brief and unspectacular thing I wanted to say. It's very isolating. It's not lonely as such because here you are; I disappear for ten days and you're still here. Then there's friends' blogs and e-mails - even e-mails sent weeks ago seem fresh to me since I've been in such a fog. I feel you are there for me, but I am not there for you.

But I'm coming back, slowly. I have lots of other things to do, because I have hardly done a thing about Christmas. I'm actually quite resigned to hardly doing a thing about Christmas for the next three weeks. I have so far written two Christmas cards; I hope you're impressed!

Top priority is trying to improve my health so that I can enjoy myself and be a part of things. A part of things is something I don't feel myself to be just now.

Saturday, December 01, 2007

Things got worse before they got better, but they did get better and I am feeling rather more sentient than I was. Plus I did achieve something this week so I'm going to tell you about that. It would be kind of a long story to explain why I was compelled to do so, but despite having been very unwell last weekend, I pushed myself very hard to keep this Wednesday's appointment with my Granny Kelly who had agreed to help me ice my Christmas cake. I haven't attempted anything like that since I was a child under her supervision and I didn't have the faintest idea where to start.

And look what we did! I have no idea how impressive this cake may look to others, but I am very pleased with it. I suppose I am particularly chuffed because before hand, even after the marzipanning (which my Mum helped me with some weeks ago), it was extremely lumpy and misshapen. Now it looks quite orderly.

In other news, there is no other news as I really haven't been doing anything else.

Do you think anyone would notice when I bring it out at Christmas if I'd pinched a slice in the meantime?

Wednesday, November 21, 2007

Thanks for your kind wishes; I hope you will forgive me if I return merely to have another moan.

I have begun to feel very sorry for myself. The fog is dense just now and my co-ordination has gone out the window (it was aiming for the door). Fortunately, [...]'s back is much improved, and he is now walking in the gait assumed in those ascent of man pictures, after the ape-creature has got up on his hind legs, but while he's still stooping and rather hairy. You know what I mean.

However, my brain... It's so frustrating and isolating. It has taken me an age to write this far. And the big killer when it has been like this for a while is that

(a) you forget when it wasn't so bad. I've been below (my personal) par for a few months now, but my brain hasn't been this mushy for all that time. I don't know when it got this bad, maybe only a week or so? Maybe less than that.

(b) you begin to fear that it will never be any better. Even after a few days, you begin to think this - mostly because you have no sense that it has been just a few days. After all, things have got worse, on a long-term basis, before now.

(c) you begin to lose confidence in your body. There is fairly obvious cause and effect in this blip, but it is really difficult to keep this in perspective. Instead, you begin to notice the many and varied ways in which the body is exhibiting a struggle. This is difficult to explain... it's a bit like when you're in a car which is making noises like it is about to break down completely.

(d) you begin to lose confidence in yourself. I keep dropping, spilling, breaking and colliding into things all the time. I keep doing strange things and forgetting what I'm doing and every now and again a muscle will give way completely and refuse to work again for some minutes. I am seriously afraid of burning the house down or injuring myself; I had a very near miss with an exploding pint glass yesterday. So all of life is being approached rather nervously.

Still, lots of things to find pleasure in. Starry skies, the sound of rain on windows and icecream. And having had a moan about it, I will probably feel much better tomorrow and feel guilty about complaining. Hmm. Hope so.

Thursday, November 08, 2007

Following her adventures in California, Sara is trying to move about a bit more. I was going to give her some tips about this, but found I had too much to say. But then I wasn't well and forgot about it for a few days (or uh, weeks). Of course, this is much more general advice than applies just to Sara, but here is my

Goldfish Guide To Moving About (when moving about is hard work)

1. Objectives, Goals and the Top Priority.

I'm not sure anybody can embark on any change in lifestyle just because it is good for you, so I reckon it's useful to have an objective. For me, exercise is primarily about improving my circulation. When my circulation improves, various other bodily functions improve, but most especially my concentration.

Motivation is also greatly assisted by having goals to aim for. Unfortunately, this is a little more problematic if you are a duffer; personally, I have aimed for goals which, with hindsight, far beyond what I might expect to achieve. Other times they have been a little fanciful; currently my objective is to be able perform the splits, simply because this is something I can't do now which I could train my body to do.

In order for exercise to be sustained, especially if you have an impairment associated with pain or fatigue, avoiding injury or over-exertion must be the Top Priority. It is so easy to set yourself back or give yourself a brand new limitation. Everyone needs to look after themselves, but the stakes are often higher for duffers.

2. Identifying AtrophyThere are, of course, a great big group of conditions which are characterised by muscle atrophy - the bastard is going to waste regardless of what you try to do with it . However, for the rest of us, atrophy is a delightful form of discomfort because we can, at least theoretically, make it go away.

The weakening of muscles through disuse is not to be taken lightly. If I swallowed a magic pill today and found myself in 100% full health, I might still collapse - and perhaps sustain injury - attempting to walk to the post office because my muscles just wouldn't be ready. But I could build myself up to it. Thus it is very useful to know how atrophy is distinct from the pain of a condition.

The easiest way to do this - providing you have two equally functional hands - is to try writing or performing another task you usually perform with your dominant hand, with your wrong hand. You know how much you can do with your dominant hand without experiencing any discomfort, but if you use your wrong hand, because it isn't used to it, it will start aching and become weak very quickly. That ache, that weakness, is what atrophy feels like. If you did the same thing everyday, it wouldn't ache so much. Of course your handwriting wouldn't ever be as good as with your dominant hand on account of your wonky brain. But most of us have slightly wonky brains.

3. Frequency above Quantity.

As part of combating atrophy as well as avoiding injury and over-exertion, it is much much much better to do small amounts of exercise often than larger amounts less often. This is even more important for someone with poor mobility than for a able-bod. Plus, you can usually do much more that way; it may seem impossible to exercise for an hour once a week, when it is perfectly viable to exercise for eight minutes every day. And that eight minutes is going to have a much greater positive effect on your ongoing health than the hour, as well as being much safer.

Someone who is physically healthy but has an big motivational block may be able to do much more in many little bouts. Five minutes four times a day, for example, would make a tremendous difference to one's physical health.

4. Make it as Easy as Possible

I don't consider fitness to be a moral issue, but I do get very pissed off with non-disabled people who chose to complain to me how they'd love to exercise but it's just not practical; the gym is too expensive, the swimming baths aren't open at the right time or the exercise bike's got a puncture. You've got a body that works, dammit, just stand on the spot and shake it about a bit!

Us duffers have to keep it simple; anything that involves going to some place, getting changed before and after and coming home again is going to use up spoons far above and beyond the actual exercise bit. Swimming or moving about in the water is excellent for any fragile body, but I haven't been swimming for years because afterwards, after you've done the exercise bit, you have to get dried and dressed as quickly as possible to avoid having your bits freeze off.

Personally, my exercise involves a yoga mat and enough space around it so I don't break anything if a limb flails in an unexpected direction. Which happens.

5. Listen To MusicMusic distracts you from the pain and enables you to concentrate on movement. Any other stimuli, speech radio or the television are likely to be too great a distraction. And silence makes you bored and boredom makes you acutely aware of how uncomfortable you are.

It is also easier to take breaks and relax for periods when listening to music; if you're bored, you get impatient and are in danger of getting on with it before you're completely ready.

Music also helps you keep your sessions within a strict time frame. The very best I've managed to build myself up to is Part One of Tubular Bells which is twenty-five minutes! At such times, I have felt very good about my body indeed, even if I haven't been able to walk much further or do anything particularly useful with it. Some interim examples have including Madame George by Van Morrison (9.45) the Adagio of Concerto D'Aranjuez (11.06 mins) and The Lark Ascending (16.16 mins). Under nine minutes, there are lots of appropriate tracks to be had, so I won't bother listing them.

6. Anticipate and Accept Plateaus and Setbacks.Over time, you should be able to build up the amount of exercise you can do, but exercise is unlikely to cure you of any chronic health condition. Therefore you are destined to reach a point where you can't really do any more than you're doing. You might have a lot of room for improvement before you hit this point or it might come very soon. Whenever it happens it is going to be disappointing and is necessarily going to involve trying something, trying to push further, and failing.

You must accept this is going to happen - if you don't, you may be inclined to push even harder and wind up doing yourself a mischief.

Then again - and it's certainly the story of my life - you may experience fluctuations in your health so that you spend a period of time patiently building up your strength only to have a bug or some other relapse trigger that puts you out of action. During my bad spells, I can't exercise; I get dizzy and very badly co-ordinated. I have unrolled my yoga mat, lain down on it and promptly fallen asleep. So I have to wait for this to pass and start again.

Relapses are frustrating and demoralising for all sorts of reasons, but it can completely crush your motivation to do this stuff. You forget the ways in which it was helpful. And it marks a tangible deterioration; a month ago you could practice yoga for ten minutes at a time, now you're finished at two. If you're not ready for that stuff, it can put you off permanently.

7. It has to be said...

Sex is one of the best physical activities available to people with pain and fatigue, especially for women who are capable of having many orgasms of significant length and potency. Orgasm can have an extraordinary pain-killing effect, which allows for exertions which are not otherwise possible. But even masturbation gets the heart beating fast and the blood moving about the body in a way that can't otherwise be achieved without sprinting up a flight of stairs. Sexual activity is good for you, on a purely physical level, especially if you struggle to exercise in other ways.

Tuesday, November 06, 2007

Alexander, frontman of Tinker and the Taylors has had a diverse career since his rock debut at just one week old. Having explored both Classical and Glam Rock genres, as well as a stint in Hollywood, Alexander returns to music in a reflective mood. The Goldfish caught up with the infant prodigy to talk about sex, drugs and rock'n'roll. Photographs by Mummy.

Tinker and the Taylor's new album, Babes in the Wood has a lighter, folkier feel to previous recordings with far more giggling than wailing. Alexander plays the piano on several tracks and whilst it soon becomes an intolerable din, he does at least try to play just one note with one finger at a time.

I ask whether this departure indicates that Alexander remains very grounded, despite the temptations that accompany international stardom at such a young age?

"I think it's hard enough being one year old, let alone when you're famous. I suppose can plead guilty to one or two showbiz mealtime tantrums and, if I'm totally honest, there have been one or two toys that I've treated like mere playthings. But at the end of the day, I want to be known for my music, not because I've been photographed leaving some seedy crèche, or mainlining Calpol."

During the last six months, Alexander has gone from being unable to sit up or crawl to being able to walk confidently. How has this changed Alexander's perspective on the world?

"I've been told that when you first fall in love, you suddenly understand what all those soppy songs were about; similarly, learning to walk has given me a greater appreciation for the work of Nancy Sinatra and Aerosmith. But most significantly, it has helped me cope with my fans. Before I could walk, strange women would just pick me up and cuddle me whether I liked it or not, but now I can run away."

We talk about the album, and the highly political nature of many of his lyrics. In the unashamed protest song, The Nappies, They Need a Changin', Alexander revisits familiar territory when he sings (roughly translated)

Come gather round people, wherever you roamAnd admit that the babies around you have grownOur toe-nails need cutting, our hair needs a combOur clothes, they are rapidly straining,And you better not think that smell's our new cologneFor the nappies, they need a changin'.

With such thinly-veiled comment on the Special Relationship with the US government and the subsequent effect on UK foreign policy, does Alexander have no concerns that fans might be turned off by his polemic lyrics? He may be only one year old, but is he still rock'n'roll enough?

"Well, Granddad says I need a haircut. I'd say that so long as you can get someone older than you to disapprove of you in some way, you've still got it."

Come on, much cuter than a cat or a cat or a squirrel. And Rosie is getting to be a superb photographer.

Friday, November 02, 2007

A few weeks ago, Dr James Watson, who with Francis Crick and Maurice Wilkins discovered the structure of DNA, made some comments which provoked lectures to be canceled and the loss of his research post. The Sunday Times article he was quoted in says

He says that he is “inherently gloomy about the prospect of Africa” because “all our social policies are based on the fact that their intelligence is the same as ours – whereas all the testing says not really”, and I know that this “hot potato” is going to be difficult to address. His hope is that everyone is equal, but he counters that “people who have to deal with black employees find this not true”.

The thing that bothered me most about this scandal was that folks struggled to explain why he was wrong. The furore quickly became an issue of acceptable debate; was it okay for a scientist to say such things? Irrational Point eloquently explains the confusion between whether what was said was merely controversial or unscientific. However, many commentators seemed to say, This is wrong because you just don't say such things. I wanted to write a little bit about why Watson's assertions were plain wrong, regardless of how offensive they were.

So intelligence. You cannot stick a probe into someone's earhole and get a smartness reading of 7.3 goldfishes (a sensible unit of cleverness, I think you'll agree). Goodness knows we've tried; weighing brains, measuring skulls, dissecting and scanning and tickling a person to see if they have a knowing laugh (another of my failed experiments). There are no straightforward physical indicators of intelligence. This is partly because we don't know what the heck intelligence is.

What is intelligence? I dunno. How is it different from wisdom, knowledge or creativity? Dr Watson has himself demonstrated the possibility of extraordinary intelligence and foolishness coexisting in the same individual. There are lots of difference sorts of intelligence – and I don't mean if you include the entirely fluffy emotional intelligence* - but intelligence applied to processing numbers, processing images, problem-solving, data recall, comprehension, translation, wit and so on.

In any case, until we learn a lot more about the brain and perhaps not even then, the only question science can answer is What is there about this thing we call intelligence which might be measured?

And thus, they came up with IQ. IQ is a very useful idea – a fact I must concede before I knock it as I am about to. A person's IQ is represented by a number somewhere along a spectrum represented by a bell-curve, where the most common score will be 100 and the further you score away from one hundred, the fewer people share your intelligence quotient or lack thereof. Originally it was calculated using a comparison of "mental age" and actual age, but not only is mental age in itself a flawed concept, but you can only apply such measures to children. Anyway, it's now all relative, so for example, to get into Mensa, you must have a “genius” level IQ of over 150, which puts you in the most intelligent 2% of the population. So goes the theory.

But, the IQ test does not test intelligence. It provides a measure of your ability to perform certain cognitive tasks within a set time-frame – tested just the once, under one set of conditions. Because of the need for inflexible test conditions, great swathes of the population cannot be tested at all. In this regard it is rather like testing fitness through a running race, assuming the fastest people to run the distances are the fittest; there are lots of very fit people who cannot run at all, and even more fit people whose immense fitness doesn't happen to coincide with speed. However, in general, there would be some relationship between fitness and the ability to run fast, so it still has its uses.

Much more importantly, you can get good at the IQ test. Practice those sorts of puzzles and you can improve your score.

This fact is the clincher, as far as I am concerned; the only measurable manifestations of our intelligence are skills and as such can be learned. Of course there are people who have a natural advantage or disadvantage, just as we do when it comes to physical activity, but no individual is born with the ability to identify the missing number in the sequence 8, 13, 21, ..., 55, 89.

In order to know the answer, one must first learn to understand what numbers mean and how to do put them together, multiply, divide and take away. You have to learn to consider possible relationships between numbers. But if you had learnt about the Fibonacci Sequence in school, you would recognise it straight away and answer using recall as opposed to reason.

Although formal IQ tests attempt to avoid anything where a person may do better because of some knowledge they have, this is ultimately impossible. And for this reason it is extremely dangerous to make any connection between IQ scores in a population and genetics.

The physical development of the brain can be effected by all sorts of subtle and not-so-subtle events from conception onwards. Oxygen levels, nutrition, disease and injury, as well as the levels and nature of stimuli a child receives before you get on to academic education.

And then there's culture. Different cultures consciously or unconsciously encourage different sorts of cognitive development. For example, a Chinese baby develops something akin to perfect pitch because the same word-sound can mean something different when articulated in a different tone within those languages. Some older generation Australian Aboriginis describe quantities as either one, two, some or many, creating a culture happily free of chartered accountants, but making them pretty rubbish at IQ tests, all of which require some basic mathematics. This, before you get onto differences in formal education levels, literacy, social inequalities and so on.

A further analogy: men have dramatically differing abilities to grow a beard according to their genes. This variation exists between individuals but also between ethnic groups. Using IQ tests to explore differences in intelligence as determined by our genes is rather like exploring one's beardy-genes by measuring the length of one's beards. From this one would conclude that the vast majority of white Western European men were unable to grow a beard, since most of them don't have beards. Beardiness is very much like intelligence; all a bit fuzzy.

So there's all of this, on top of the fact that race and ethnicity are largely cultural constructs. Of course, we have different genes which determine skin-colour and other things, but it's only by our external features that we use to determine our ethnicity; external features which only say one thing about our genetic heritage. Because of the way that race and particularly whiteness works, a person may have three white grandparents and one grandparent of colour and yet be identified in some non-white category. The whole thing is artificial, we're all a great mishmash and this is especially the case when talking about as diverse and large a group as Black US Americans.

Now, none of this means that there is absolutely no genetic difference influencing intelligence between people of different ethnicities. It is not beyond the realms of possibility, although it would have to be very slight because it seems so counter-intuitive. However, at this time in the history of science and in the history of humankind, there are other possibilities which might explain a difference in the typical IQ scores of different ethnic groups** which seem far more likely. Like the massive inequalities in education within our societies and throughout the world.

As far as Africa's problems are concerned, in the hundred years previous to 1945, Western Europe experienced bloody civil wars as well as international conflict, dictatorships and oligarchies, genocide on a massive scale, famine and pandemic disease. We have no reason to think those white Western Europeans were any less intelligent than the white Western Europeans of today. Africa's problems have nothing to do with the intelligence of its people, but the circumstances that face them, the lack of virtue in some of their leaders and the stupidity (as in lack of wisdom) of white Western Europeans who buggered things up there in the past.

And alas, Watson's comments about black employees read way too much like “You can't trust a [insert racist term].” In reality, a person having been employed on their merit is not going to reveal themselves to be of lower than anticipated intelligence at a later date. But there is the old racist stereotype that black employees will let you down one way or another, of which I hear an echo here.

Waston was wrong, but not because what he said was offensive. It happened to be both.

He has since apologised for what he said in such terms that it is difficult to work out how he managed to say such things in the first place.

If you got down this far, you deserve a joke, which as ancient as it is silly. But every time I read Dr Watson, I think of Holmes and Watson and this appalling joke.

Sherlock Holmes surveys the crime scene and asks his companion what he sees.

“Well,” says Watson, “I see a naked man lied on his front with what appears to be a yellow citrus fruit between his buttocks. So then, Holmes, what do you make of it?”

* I don't like the term emotional intelligence because it lumps a lot of things together which actually deserve to be recognised, explored and appreciated for their own worth, without needing to be compared with this very different thing we call intelligence. Empathy, tact, wisdom and compassion are highly valuable and in many circumstances, far more valuable than being able to find the root of seven hundred and twenty-nine. The concept of EI seems entirely superfluous.

** I haven't linked to this data as I cannot find a reliable on-line source. There is a much disputed Wikipedia page if anyone wants to get an idea of the kind of data we might possibly be talking about. However, as far as I'm concerned it is how we might understand that data rather than the data itself which is important.

Wednesday, October 31, 2007

It's Halloween, it's dark outside and Jack P is collecting spooky stories. This is my bit of silliness. It is called Better Late Than Never, but it is also a little late because, in an undoubtedly related turn of events, my Internet connection was down at the point it actually got dark...

Better Late Than Never.

In one hundred yards, turn right.

Ever since I had been invited to this meeting, I had been imagining the conversation my mother and I would have had. Headhunted. I would have felt compelled to tell her about it, even though it would be a secret from almost everyone else, even though I knew that if I used that word I would invite the story about her great uncle Albert and the shrunken head he brought home from Peru and how he later came to believe it was cursed when her great aunt Henrietta had died suddenly, thirty-years to the day after it had arrived in the house. She would ask me what the move, if it happened, might mean to me, I would give her the figures and she would respond, “But what on Earth do you need all that money for?”

In fifty yards, turn left.

Well mother, perhaps I hoped that after my funeral was paid for, there might be more than five hundred pounds to show for my life's work and investment.

Continue for one mile.

It had all been rather embarrassing, that day in the solicitor's office. Not that I had any sense of entitlement - in fact, I'd half-expected for her to have left a fortune to a toad sanctuary or an overseas project to save the lesser-spotted sanguine mollusc. But I was conscious of how it must have looked like; the contrast between my clothes, my car and my business address and the picture of a poor little old lady ending her days with her terrace house mortgaged to the hilt and no assets to speak of. They might think I had neglected the woman.

At the roundabout, take the second exit.

I don't think my mother was capable of embarrassment and she certainly never understood my own. She had always tried to tell me that it didn't matter what other people thought, when in fact nothing matters more. We are social animals. All our fortunes hinge on what other people think.

Take the second exit.

So the phone had been my act of vengeance; spending my “inheritance” on an item which my mother would have considered entirely superfluous, if not vaguely oppressive.

Bear right and enter the motorway.

To me, having everything there in the one unit; my diary, my e-mail, my addresses and phone-numbers, Internet access and Satellite Navigation, avoided a great deal of time and bother. Anything which helped me to be organised, punctual and up to date with everything and everyone, helped create the right impression, the impression which had the chief executives of competing companies like Alistair Mackenzie inviting me for a euphemistic drink and a chat of a Wednesday evening. My mother would see such a device as a shackle.

Continue for three miles.

The Sat-Nav was a good example; my mother felt that a journey of any length should be considered an adventure. When I was a child, we were always on some detour or other. My mother seemed to consider every brown heritage sign to be a personal invitation: Come and look at our stone-circle. Come and look at our ruin. Don't spare a thought for the people who are expecting you or the event which you are becoming increasingly late for as you meander through the countryside. Sometimes she would take me to unsignposted places she knew about and had a sudden urge to show me. I don't think my mother had ever had a strong sense of needing to be anywhere in particular.

In five hundred yards, bear left and exit the motorway.

There were always stories attached to these places; my mother knew so much about this county's past that she could have written books on the stuff. Sometimes it was straight history, sometimes it was legend and often, especially as I grew older, I got the impression that she was simply making it up as she went along. In keeping with her life philosophy.

In one hundred yards, bear left and exit the motorway.

Thus the five hundred pounds, I suppose.

Bear left.

I was surprised to find myself leaving the motorway so soon. I was expecting a good hour's journey; this game had rules and the meeting was to be held firmly within their territory. I had been invited there tonight, but it was not going to be made too easy for me. Out of hours, informal, inconvenient.

In fifty yards, turn right

It was suddenly very dark away from the motorway. There were no street-lights on this road; not much of anything. The lights from a few houses set back from the road, a couple of vehicles passing the other way and the dirty orange glow of a population centre beyond the horizon. Which town or city that might have been, I had no idea; this was an unfamiliar part of the county and I had somewhat lost my bearings.

Continue for one mile.

For stretches, the road tunnelled through woodland before jutting out across unseen farmland; grassy ridges either side of me and total blackness beyond. I was startled by the sight of my breath; I hadn't noticed it getting colder. But I didn't feel I could do much about this just now; I couldn't adjust the heating without glancing down at the controls and in this visibility I didn't dare. Nor, I have to admit, was I inclined to pull over.

In one hundred yards, bear right.

There was nothing sinister about the countryside at night; I was just nervous about the meeting, perhaps especially so because I didn't really know where I was going. Of course, I didn't need to know where I was going; the Sat-Nav only ever faltered on brand new roads or in areas with many overpasses and underpasses, but a mistyped postcode wasn't beyond the realms of possibility.

Bear right.

The only place to meet anywhere round here would be a village pub. Men like Alastair Mackenzie do not do business in village pubs. In any case, Gaston's didn't sound very much like a village pub.

Destination in fifty yards.

A still white mist hovered above the road ahead, appearing luminous in the headlights. The mist rose and curled around the car as I drove on, its movement and silence seeming inconsistent. The seatbelt felt inexplicably tight across my chest. I approached a junction and when I arrived, the Sat-Nav told me

Destination.

but this was so not my destination. This was a crossroads. Without hesitating, I continued straight on for a hundred yards or so, but there was nothing there. I turned around at the first farm track I found and returned to the crossroads.

Destination.

I stopped the car and summoned up the phonebook. My fingers, made clumsy with the cold, struggled to navigate the tiny keys as I tried to find Alastair Mackenzie's number, so much so that I inadvertently clicked through to Weather Forecast. I eventually found the number, clearing my throat in the hope of feigning calm. The phone did nothing for a moment, before a new screen came up informing me

Network Unavailable.

No signal. Noteven a poor one; none at all. Christ. I couldn't imagine Alastair Mackenzie setting foot in an area not covered by the major mobile networks.

Destination.

The voice seemed to say it louder this time, perhaps because the car was stationary. I abandoned the phone, turned left and drove for a while up that road, but again, there was nothing there, no pubs, no houses – or at least nothing with any light coming from it – and no phone signal. There wasn't the faintest glimmer suggesting civilisation in any direction. Again, I turned around and went back the way I came. I didn't pause as I passed through that accursed crossroads

Destination.

but found exactly the same in the other direction, so I came back.

Destination.

I didn't want to be in this place for another second, but these roads were so similar that I was no longer sure from which direction I had arrived. I began to fumble with the phone again, trying to locate the e-mail from Mackenzie with the details for this evening, to check the postcode I had entered. This time my fingers were shaking, hopeless.

I managed to press the mute button at least it wouldn't speak to me again, placed both hands on the steering wheel and tried to take deep breaths.

My driving about had disturbed the mist, or perhaps it was clearing by itself, so that I could now see more beyond the edge of the roads. It was then that I noticed the grave. It was the colour of the flowers that had drawn my eye; a posie of vivid blue and yellow fresias, laid in front of a small grey stone cross, about two feet high and a foot wide, on the verge diagonally opposite from where I sat. The cross was unmarked. It wasn't easy to tell from here, but I knew. I had been here before. My mother had brought me here before.

Usually such graves were attributed to gypsies, my mother had told me. Someone continued to keep the grave tidy and lay flowers even after a few hundred years. But she added that in fact, all sorts of people who could not be buried in consecrated soil, tiny babies who had died without baptism or those who had committed suicide, were buried at crossroads. My mother had explained that this was because such unhappy souls were believed to rise from the dead and the crossroads would disorientate them, preventing them from reaching the villages and homesteads.

For a moment, my feet seemed to be glued to the floor of the car, my pulse drumming the back of my throat. Then at last my foot found the accelerator and I turned right so fast and hard that the tires screeched. I sped away, glancing in my rear view mirror as if expecting the swirling mist to take shape and chase me.

I knew I hadn't turned a great many corners, and after a few lucky guesses, the lemonade light of the motorway came into view, more welcoming than I had ever thought of it before. Immediately, my terror not only faded, but began to seem a little ridiculous. I had just been lost. People get lost. Machines make mistakes. Haunted crossroads, indeed; more likely than being concerned with ghostly spirits, those who could not bury their loved ones in consecrated soil saw a substitute holy place at the mark of the cross.

The fact that the motorway traffic appeared to have ground to close to a halt in my absence did little to sink my spirits. As soon as I had pulled into line, the phone began to vibrate with an incoming call. It was Alastair Mackenzie. I pressed receive.

“Alastair, I'm so sorry; I was just about to call.”

“Thank God!” he exclaimed. “Are you okay?”

“Yes, fine," I replied, quite baffled at his concern.

“It's just that you're always on time for everything and when I heard – five minutes ago, on the radio – I thought you must have been there then and when I tried to call there was no answer. Where are you?”

“I'm in a queue on the motorway,” I said. “Where did you think I was?"

“The bridge, Blackwater Bridge, it collapsed. The whole thing came down, they don't know why or how many people... I thought you simply must have been there. Are you running late? Thank God!”

“Yes,” I said, pausing as a police helicopter passed overhead. “I took a little detour.”

Sunday, October 28, 2007

Today's style tip is one for the wheelies:Avoiding Wheelchair Blanket.

Wheelchair blanket is the tragic and psychologically debilitating condition in which a wheelchair-user finds themselves with a blanket - usually of a plaid pattern - placed over their knees. Whenever I see wheelchair users in this situation, I assume that someone else put the blanket there; certainly every time I have suffered wheelchair blanket, it was entirely non-consensual.

Not only is this a decidedly unglamourous look, it is also a little impractical; the blanket slips down, gets dirty at the bottom and can even get trapped in the wheels. One can get specially designed wheelchair blankets, which often appear like the sort of plastic body-bags you see in crime dramas except with a hole for the head to stick out. Nice.

There are good reasons why this condition occurs; (a) a wheelchair-user's legs become much colder than those of a vertical type on account of not walking and (b) immobility causes or exaggerates existing problems with circulation, making the wheelchair-user's legs colder still, and rendering the feet prone to freezing and falling off.

Of course, a wheelchair-user can hope for a cozy arse; the wheelchair-user's rump remains well-insulated, usually against a cushion or at least a layer of water-proof unbreathable fabric. These means that it is not merely a question of dressing up like an Artic explorer, since one likely to get rather overheated in the posterior and fiddly bits.

So basically, this is how to keep your legs as warm as possible without resorting to the accursed blanket. I'm not sure I've ever combined all of these at once, but they all make a difference:

Hairy legs. If you get very cold legs, then chances are, nobody catches sight of your legs between September and May, but even so the Hobbit look is very in this season, as are an array of Tolkein-inspired style innovations. In jewellery, the ring is the new body-bar.

Massage the feet and legs before going outside. Anything that will stimulate blood-flow will help. Especially if you use something warming, some slimey stuff with cloves, ginger, cinnamon etc. in it. Deep Heat muscle rub or Olbas Oil will do the trick, if you don't mind spelling like you've got a cold.

Wear fishnet tights. Fishnet, mesh or crocheted tights or stockings are superb at keeping your legs warm whilst still be being nice and breathable. It is the string-vest principle. Those big burly men on building sites, in my experience, are all wearing fishnet tights under their jeans to keep warm in the winter months. Of course, fishnets will only keep you snug if you cover them up with other layers of clothing. Oddly enough, the place which I have found sells the nicest and best quality fishnets at not unreasonable prices is M&S. I know. The shame!

Over the knee socks. I have been wearing these for many years, but it would appear that Victoria Beckham, following my example, has started doing the same. Thus over-the-knee socks are currently quite widely available in the shops. I would source them from eBay myself, because I am a cheapskate, but you can get a number of different colours from Tightsplease and I discovered the wonderful US shop Sock Dreams, which has a huge range of OTKs.

Lace-up boots. All the boots should have laces on them in my opinion, but they are ideal for our purposes because they can be adjusted to fit over however many pairs of socks you need to wear under them. The very funkiest boots for wheelchair-users are New Rock Boots, as worn by Mik Scarlett and many a cybergoth wheelie.

One great advantage of not walking very far is that, unless you have interesting feet, you can buy cheap shoes which last forever. I've had my lovely boots for years, and every now and again I give myself a totally new look by replacing the laces with different coloured rattail, which is about 25p a metre. People hardly recognise me after such a transformation.

Remember old-fashioned underwear. Long-johns, petticoats, pantaloons and so on; people used to keep perfectly warm without synthetic fleece or waterproof fabrics. Personally, I mostly wear long skirts, so it is a matter of wearing another skirt underneath. You can buy such items at great expense from historical costume shops, but underskirts especially aren't that tricky to put together yourself (make a bit tube, sew elastic round one end, basically).

Uh... that's all I can think of just now. I'm sure someone else will have some suggestions.

Wednesday, October 24, 2007

My Mum and I went shopping on Monday, which was quite an adventure. She complimented me on my incredible fashion sense, "You always wear things that go together," she said, "except sometimes when they don't."

So since my brain is in such a state at the moment and because I am in a funny kind of mood, I thought I would post the occasional brief style tip so that you too can benefit from my remarkable aesthetic taste and so that you too can look fabulous this winter!

First, this seasons most style essential tip. Metallic fabrics are all the rage this winter; all shades of lamé, spandex and other fabric I don't know the names of with glitter and sequins. And not just on shoes and handbags; sparkly is most definitely the new beige.

Topshop have a number of different pairs of foil leggings, including this magnificent pair for £18. Now, given that they have been placed on a ideally-proportioned mannequin and photographed in the best possible conditions, one does wonder how anyone who isn't a professional dancer or indeed, a magpie might possibly be attracted to such an item.

Thursday, October 18, 2007

I so desperately want to write something, anything, but my head still isn't working. At least this week, I am getting more bursts of mental activity. I have several bits of notes about my book, bits that might become blog posts, bits of e-mails, letters, and the answers to my bloody DLA renewal forms (they do pick their moments*). I have lots of ideas. I'm also still having significant computer troubles, too tedious to go into but jolly frustrating.

I know I am gradually getting better but it's not nearly better or soon enough.

* Actually, there's some advantage to filling in benefit forms when you've just had a bad patch, since it is still clear in your mind how bad it can get. When things are going well, you're inclined to write, "Well, I do have one or two problems, but I'm fine really!" Depressing business though.

Saturday, October 13, 2007

Today was my Mum's birthday. She is apparently now 39, which is pretty impressive for someone born in 1953. I did finish making her present, which I forgot to photograph but [...] responded to my suggestion that I might be up to baking a cake this week with some rather strong language. Good job too, as this meant that Rosemary had to improvise something and thus...

A Dalek Cake! And partly through the power of blogging. See, Lady Bracknell's Editor wrote about her cake-decorating and Jess wrote a comment giving a link to the Flickr pool of Dalek Cakes, which really is... something. Mum has always a had a thing about Daleks; the very first film she took us to see at the cinema was Doctor Who and the Daleks when it was being shown at the Ipswich Film Theatre (which shows old films, foreign-language films and very rude films of unquestionable artistic merit which can't go on at the normal cinema - Doctor Who and the Daleks came into the old category, in case anyone wasn't sure). So it was a very appropriate theme for Mum's birthday cake, but one Rosie might not have thought of if it wasn't for me ol' blogpals.

And as you can see, it is more than up to standard to join the photo pool. The accompanying biscuits were made using a Dalek Biscuit Kit available at Sainsbury's.

We all sang Happy Birthday in the style of Daleks (instead of doing the "Hip hip hooray!" at the end, you have to break into "Exterminate!") and then we, well, exterminated it. And very nice it was too. At one point it had sparklers attached but they had kind of sparkled out before I had the chance to take the photo.

I tried to take a photo of Alex with my mother, his Superbat, but they were all blurred, so you get Alex and his Mummy instead. Alexander was fine; his current obsession is talking on the phone. Only anything will do as a phone, which he will put up to his ear and babble at. His preference is for a real phone, which makes noises when you press the buttons on it, but a shoe-horn is apparently an adequate substitute.

Rosie has recently started giving music lessons for a few hours once a week during which he stays with a child-minder, and perhaps as a result, or perhaps as a complete coincidence because that's where he is in his development, he has entered that phase where he gets really upset when she goes away, even just out of the room. But all babies go through this and I've seen much worse (rephrase; I have been subjected to much worse as a teenaged babysitter).

First time I've been out of the house in weeks and weeks, so that was nice too.

Thursday, October 11, 2007

I had a go at a proper blogpost! Fingers crossed. And before I depress you with this little dirge, Jack"O'Lantern"P has had a really good idea for later this month - we're all to write spooky stories, which we'll publish on sundown (whenever that happens to be where we are) on Halloween. Do go over and tell Jack if you're joining in.......

The mother of fifteen year-old Katie Thorpe, who is has severe Cerebral Palsy, is looking into whether or not it is legal to perform a hysterectomy on the lass in order to relieve her of the indignity associated with menstruation. The BBC News story is here; Penny has kindly collected blog responses here. Now I have to say, if this actually happens, I will eat my hat - the one with the really wide brim, the feathers and everything. Really. So actually, I don't find the case terribly interesting; of course a person should not have such a serious operation for non-medical reasons, let alone in a case where consent cannot be obtained.

What I do find interesting is attitudes towards the mother. I have massive sympathy with this lady. I think it's quite possible she may have been misled by well-meaning doctors, is going through what must be quite an ordeal to argue for this, especially in the media where she will undoubtedly be touched by criticism and, I believe, all for nothing. I'm not sure I understand why a mother in this position would quite be so anxious about the issue of menstruation, but perhaps it has become a focus of fears for the future*? Don't know, none of my business.

But what happens to her child, or any child in my society, is my business, and this is where the press coverage got a bit weird. However, to be completely fair, it got weird in exactly the same way it did over the case of Charlotte Wyatt.

Charlotte Wyatt, you'll remember, was a teeny weeny baby who was born three months prematurely. She was very poorly, and there was a question as to whether she should be resuscitated in the event of her stopping breathing. Usually, doctors and the parents would talk through and make such a decision together, but in this case relations broke down; the doctors said they wouldn't resuscitate and the parents fought this decision. This went to the courts and the judge found in favour of the doctors.

At the time, it was said that Charlotte's life was all pain and suffering and death was imminent. And yet, this was four years ago and she's still here.

Now the two cases are obviously very different. The decision not to resuscitate is often made where someone is very ill or very elderly, and usually there's very little moral ambiguity. Resuscitation can be a violent process and medicine does not have a principle objective of keeping a heart beating for as many days, hours and minutes as humanly possible; the decision not to resuscitate is usually a matter of This person is dying; there's no point trying to stop it when the inevitable happens. Many people, myself included, felt that the very wording of the judgment in Charlotte's case was more about her being disabled and therefore understood to have a poor quality of life and poor future prospects for her quality of life, rather than the belief that she had no hope of survival.

Meanwhile, it is extremely unusual in the UK to perform a hysterectomy on any young woman, let alone a child, and even then it would be only done in extreme circumstances, as a last resort.

However, what the cases do have in common is the press coverage, and people talking about the case, immediately hone in on the parents. It should be up to the parents to decide; some commentators talk as if this is an entirely private decision which should be left entirely up to the mother. Others declare that these people must be terrible parents for wanting X course of action for their children. Thing is, how we make these decisions as a society should have sod all to do with the parents; we don't allow parents to imprison their children, cease their education, marry them off or to discipline them with injuring violence. But this is different. These children are disabled.

I think there's a real danger in imagining that all parents of disabled children are or should be saints, or somehow ¨ber-parents, incapable of the humdrum human fallibilities that exist in all other parents. Some of them are going to be brilliant; the parents of disabled children I know personally or feel I know through reading blogs are superb advocates for their children. And I do have sympathy with the others; whilst it is okay for a disabled person to occasionally crack and say, "Woe is me! I wish I were normal!", we're a little unforgiving when parents say the same about their children - even in cases where their lives have become inextricably linked and where parents are disabled by proxy**.

And as a society, we're not great with these families. I don't believe we should be handing any medals out, but practical and financial help, support from employers, equipment, state care and respite provision, as well any support we can offer as family members, friends and neighbours. The parents of disabled children are not angels, so we shouldn't put them in a position where they'd need to be angels in order to survive. This is a feminist issue as well as a disability one, because women make up the vast majority of those providing unpaid care.

All that having been said, the state must intervene in certain matters which could have a dramatic effect on the welfare of a child - like whether they are going to have major organs removed. Some of this stuff is explicitly covered by law, which has nothing to do with how lovely a parent is. Where it is unclear how the law might be applied, intervention has to take into account several different perspectives. These will include;

The child. Every effort should be made to try to ascertain a child's opinions on their own healthcare. Children cannot give proper consent (I realise in law, it's a little more complicated than that), very young and severely impaired children cannot offer any opinion whatsoever. However, every effort should be made to get some kind of gage of the child's hopes and fears directly from the child.

The parent(s) or principle caregivers. They are likely to have a very good gage of their child's functional limitations and what the child is like as a person. They are important stake-holders because major decisions effecting their child are likely to effect them, but their independent interests are irrelevant (yeah, I know that's hard to define). Parents of disabled children do not necessarily have the best interests of the child at heart any more than the average parent. Indeed, disabled children are particularly vulnerable to suffering at the hands of their parents.

Doctors and other healthcare workers. It is just as ridiculous, in cases where a controversy has already been established, to say that it should be up to doctors to decide. Doctors know about medicine, about diagnoses, prognoses, potential complications and so on. A doctor who knows her patient well may have great insight into their best interests, but this is not something which comes as default with expertise about a medical case.

Medical ethicists. These are people who have studied the moral philosophy of medicine and who attempt to wrangle out difficult cases using logic. In theory. They will usually know about precedents a case can be compared to, the law and government policy. However, it may be argued that because medical ethicists inevitably reflect the particular values of a society in their decision-making, including the prejudices a society may have.

Disability Advocates/ Campaigners. These are people who have massive experience of the mechanisms of disability within healthcare systems and elsewhere. They are expert in the sort of mistakes people make, and their tragic consequences, when it comes to considering the best interests of disabled people. That having said, being disabled is no authority of the inner thoughts and preferences of any other disabled person, whatever similarities between their experiences.

Judges. Unlike other parties, a judge who becomes involved in such a case is obliged to hear all points of view, consider the law in which he is expert and apply it accordingly. The law is supposed to reflect the values of society. It is a judge's responsibility to act without prejudice, but they're only human.

Too many cooks? Not when it comes to life and death decisions and major stuff like giving a medically unnecessary hysterectomy to a child who can neither give or withdraw her consent. Everyone who speaks on this matter has an imperfect perspective. No decision which effects a person who cannot speak for themselves is ever going to be simple. But we don't make better decisions by assuming that through the magic of parental love, mother must always know best.

* Some folks in the blogosphere have suggested that this action is partly motivated by fears that Katie may be more vulnerable to sexual abuse if she is allowed to experience 'normal' sexual development (one argument cited in the case of Ashley X), but I haven't seen any suggestion of this from the parties involved.

** There is currently a case in the European court, where a British woman is claiming she was discriminated against at work because of her son's impairment - now that is interesting.

Sunday, October 07, 2007

Next Saturday is my Mum's birthday and Rosemary and Alexander will be in Suffolk. Originally Rosie, Alex and I were planning to go to Felixstowe on Friday to visit two of our great aunts and talk about the family tree that Rosie has been working on.

I wanted to ask my great aunt Molly about her conjuring alter-ego, Professor Mollovitch since I have taken on the sacred mantel of transvestite-magician-auntie. So far I can do several card tricks quite well, only when I get to the stage where I ask, "Is this your card?" it generally isn't. I can read minds and levitate small vehicles though, so that's something. And I make a very convincing chap, as you can see. I mean, you may struggle to believe it, but that beard is actually false. No really, it is; I didn't grow it. Pretty impressive, eh?Anyway, Friday's adventure is probably out for me. So instead this week's objective is to be well enough to go round my folks' house on my Mum's birthday. I also want to finish her birthday present which I have started making and I did fancy making birthday cake... but those are secondary objectives.

I have actually made a cake in recent months. Sometime in July, I made a Christmas cake. Well that's what you're supposed to do; make the cake half way through the year, then "feed" it with brandy. So far, about half the bottle of brandy has gone into the cake, so by December it's going to be a serious fire-hazard.

Oh is boring to be sick - it's not just the fact you are sick which is boring, but the fact there is so little else going on apart from being ill. Moan moan moan, whinge whinge whinge.

In other news, while she's down here next weekend, Rosie is attending her ten year high school reunion. On hearing this I said, "Yeah, but do you actually want to go to that?"

"Well, I think I should," she says, "especially as I'm organising it."Oops!

Thursday, October 04, 2007

I've got computer problems on top of everything else, so I am attempting to project my words psychically onto Blogger, hoping that none of my peripheral banana mental activity slips through itch accidentally. Thank you for all your good wishes; they are very much appreciated. Things are simply bound to turn around soon, if they haven't already. Today is quite good as the constant impenetrable headache I've had for the last four or five days has suddenly vanished. Also I've finally got Away in the Manger out of my head.

My mental jukebox is prone to getting jammed when I am particularly unwell. And I mean jammed; it's not a question of having a song drifting in and out of your mind throughout an afternoon. A song gets stuck and plays more or less constantly for a number of days; I sleep and it accompanies my dreams, however irrelevant. Usually, this is a song I like, perhaps a song I have listened to many times over, but during this period it has been completely random songs which mean nothing to me and becoming annoying on the second repeat. I only know one verse of Away in the effing Manger. But today it's gone.

Another positive, if in retrospect, is that by not going to Southampton, we avoided the vomiting bug that befell my sister and her family. Meanwhile, very little is happening, but while I have been projecting this post a package from Maplin has arrived so if we have a good thunderstorm tonight, we may be able to bring the dearly departed computer back from the grave. Although we've done this before and it does tend to lose a bit more of its humanity after every resurrection.

In any case, still not up to much but I'm basically okay. Just waiting for a change.

Wednesday, September 26, 2007

I have decided not to say that I'm feeling a bit better, because I keep saying that whether or not it is true. I did however manage to finish this somewhat disjointed post, so it would probably be true today. Anyway, both Tokah and Elizabeth have been writing about courage and disability lately, and I wanted to add my pennysworth, even if I arrive at much the same conclusions.

The reason brave and its synonyms are such unpopular words among disabled people is that the concept is frequently applied to us by default, as if our existence demands courage. The classic account is where someone with a visible impairment is approached and told that they are "brave" by a total stranger. Which is offensive. Unless of course, they have left the house wearing fuchsia pink wellies and leopard-print leggings or something - that would be brave.

Impairment is something that happens to you or the way you happen to be, not something you take on. And I think in order for courage to exist there must be internal conflict; a person must be afraid and act against that fear. It's not just a matter of having the psychological equipment to do something; people say I am calm in a crisis, but this isn't because I am brave, only my brain doesn't work quick enough to muster up a panic. There are also behaviours and attitudes we can mistake for courage, perhaps especially in ourselves. Stubbornness, recklessness and even denial can feel like courage because we are having to doggedly overcome a deep inhibition - even if, on consideration, we might find this inhibition to be perfectly reasonable.

I think courage also requires some sort of virtuous purpose. The most admirable form of bravery is undoubtedly when a person overcomes fear for the benefit of other people, and the range of this can be enormous. I also think we can consider any act of genuine self-improvement (such as wearing fuchsia pink wellies) to be virtuous and admirable and arguable for the greater good of everyone.

At one point not, so long ago in our culture, we made heroes of people who went to some place uncomfortable and stuck a Union Flag in the ground. Such men went to the North Pole, the top of Everest, crossed desserts and oceans and dense jungle without so much as a loosening of the cravat. They were heroes, but these days a lot of similarly dangerous physical activity has become mere sport and as such, is not nearly so celebrated.

Unless those people have physical impairments. Now, physical impairment can be a major obstacle in various activities, but it is a purely logistical one. If you want to get a wheelchair-user across the Grand Canyon on a tight-rope, the principle issue is logistics. For this reason, a disabled person may need to be more determined in their efforts to partake in these activities, but they don't need an ounce more courage than anyone else doing the same thing. And as it is just a hobby, are we right to call it courage at all?

Yes, yes, yes, some of them are brave; some of them would meet my criteria, but point is that there is no default on this stuff.

On a similar theme, there's a particular reaction to impairment itself which is sometimes considered brave; "I'm not going to let this defeat me!" she cried as she got up and walked on her broken leg, resulting in the fall that broke her neck.

Dominant models of disability use the language of warfare to describe our relationships with illness (at least with serious illness; you never hear anyone say "I've just come out of a vicious skirmish with a verruca!"). Denial can very easily feel like courage; you lose sight of some fundamental differences between facing facts and giving in. Elizabeth recently mentioned those who "bravely" refuse to consider themselves disabled. And Nelson put the telescope up to his injured eye and declared, "I see no ships!"

But some of the most heroic of history have been about making peace with the enemy, acts requiring far more courage than it took to keep on fighting. Similarly with illness and a lot of life crises. In fact, since I just mentioned Nelson, he is also supposed to have said, when he was shot in the arm, "Let me alone: I have yet my legs and one arm. Tell the surgeon to make haste and his instruments. I know I must lose my right arm, so the sooner it's off the better!" as opposed to, "Gangrene schmagrene, my arm will be just fine!"

I think that it takes a fair amount of courage to accept the facts about ourselves, our lives and our limitations, but perhaps most especially, to accept this and the fact that our happiness remains in our own hands. Impairment is just one thing which can make a person feel that their life has been ruined. It is natural that people respond with distress to a crisis, but in the long term it can be tragically easy to accept discontentment. People do this all the time, feeling themselves condemned to a state of not being happy, because of some great disappointment, some failed potential or other. Occasionally, individuals who vehemently argue for their impairment as a positive part of themselves will nevertheless argue that disability ruins their lives, since they can't get a job and nobody likes them, everybody hates them and there isn't a ramp down into the garden so they can't even go and eat worms.

So people who have good lives, despite taking blows that could have destroyed them - or simply turned them into miserable bastards - are heroes. And I do know a fair few of these who happen to be disabled.